Saturday, 19 December 2015

I haven't felt this scared in a while. I'm not sure if it's just that Jaydens next MRI is around the corner or that I woke this morning reading of two other children with Jaydens condition recently relapse after four years in remission, or that a friends child has also recently relapsed. it's know doubt, all of the above. I'm really terrified.
I wanted to be writing about Jaydens graduation ceremony at kindy the other day and how exciting it was, how proud I was, and how emotional I felt. I wanted to have the feelings of hope inside, that one day I would see him graduate from high school and then maybe Uni or whatever path he chose. But instead I feel empty. Scared. Really fearful of the future and the sense of needing to grasp hold of every second with him and not let any of it go, is overwhelming.

I spent today with him. We went to the river first and collected shells so that he could complete the border he is doing around the flower garden we planted together out the front of our house. We walked along the sand picking the ones he liked best and I watched him, soaked him in, quietly praying inside that he will be ok. Constantly hoping, wishing, praying.
We then went to a coffee shop and had a milkshake and snack. All the while I just soaked every second, all the while fearing about the future and all the while trying not to think about it. A constant battle going on in my mind.

I watched him tonight as he slept and I felt the tears well up in my eyes. I'm trying. Trying to live in the moment. Trying to stay positive and hopeful but some days feeling succumbed to the fear.

At his graduation the other day the teacher told us what each child wanted to be when they grew up and what they wanted Santa to bring them for Christmas this year, as she presented them with their certificates. Jayden wants to be a builder and build houses, she said. I was so proud but so sad. So worried and so fearful that he won't get to be the builder he hopes to be. He wants a forklift from Santa "one that works", she said. that made me smile. His dreams and wishes are big. I stood there hoping and praying he will fulfil his dreams. I looked at all the other parents and envied their feelings. Knowing they are like I was, at Lukes kindy graduation and Layla's, then, not having the fear, the worry, the sadness but instead seeing my child grow and looking forward to the future with them. Instead I'm standing there at Jaydens, hoping and praying That one day he will have that future, that he will be that builder and drive that forklift. But also knowing, and trying to fight off that knowing. Trying to shake that low odds, that slim possibility, and trying to focus on him being that slim chance. With every inch of my being I want that. Trying to focus on the now, the moment, enjoy that moment and wish for many more years of beautiful moments.

Christmas is around the corner and every morning Jayden wakes with excitement to move the felt candy cane in our advent calendar into the day's pocket and retrieve the treat in it. He counts the days and his face lights up as he realises how much closer we are getting until Santa visits. This is such a beautiful time of the year. But I can't help but feel torn between emotions. Happiness to be blessed to be spending it with all my children but fear of the next Christmas. That constant battle in my mind.

He's asleep. So should I be. Hoping and praying that we get so many, many more Christmases together as a family, what I wouldn't give for that.



Big smiles at the coffee shop with mum


Deep in thought.


Kindy graduation


Hanging out with his mate


Love this smile. :)


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Tuesday, 8 December 2015

Again, It's been so long since I last wrote and that Is probably a good thing. It doesn't mean I haven't needed to vent but rather I've found other ways to cope.

A lot has happened and a lot hasn't changed. I still worry incredibly about any changes with Jayden and anything and everything concerning Jayden. I've learnt to try and not stay in those moments of thought for long as they can be so overwhelming and I try to push them to the back of my mind if I can. It's That sick feeling in my stomach and overwhelming sadness that can so easily engulf me. I've learnt to manage it to some degree. Some days are easier then others but some days are very difficult.
Certain things will take me back to those moments of utter despair and an overwhelming feeling of sadness engulfs me. To be completely blunt, it's scares the shit out of me.

Today for example, Jayden came in to see me in the kitchen holding his head crying. He was so upset he couldn't get his words out and I very nearly fell to my knees. The fear engulfed me and the sadness drowned my every thought. It all came rushing in as it always does and it's not until he tells me what happens that I feel it all slowly drift away from me, but still linger in the background, ready to pounce on me again. He had knocked his head on the door in our room and a big cuddle was all he needed. His little face, with tears in his eyes, crushed me. So many memories....sad thoughts....fears.

The moment left me feeling vulnerable and scared. Those moments always do. The thoughts that linger swirl around in my head and as I go about the rest of the evening I feel like they are knocking at a backdoor in my mind. Once everyone is in bed, I find it difficult to sleep and now as everyone else is dreaming I'm awake worrying.

It's also coming up MRI time and the anxiety is definitely ramping up. Every movement, word, look from Jayden I know I'm analysing. Constantly worrying.

He went back to school this term. So did Luke and they are both very happy there. The reason I did homeschooling ended up being the reason I also stopped. For my boys. Towards the end of our second term of homeschooling they both expressed their wants to return to school and have friends. They had met the local kids in our new neighbor hood and made friends and wanted to be at school with them. It was hard for me to recognise this for Jayden and to accept that this may be the best thing for him. The school was great though and like previous schools we have been to, were very understanding.
In the beginning I stayed with Jayden but it really wasn't long before he made friends and was happy for me to leave. He has made one special friend in particular whom adores him and they are very happy together. It made me feel so good to see him develop that friendship and for him to feel "normal".

He now looks forward to school and I look forward to hearing about his day.

We also have a new edition to the family and that is a little kitten. Like all our animals it adores Jayden and is often amongst his Lego with him as he plays.



I find myself spending a lot of time staying busy. The more I move the more I leave less time to think. At least that's what I try and convince myself. When I do this though I then find myself feeling guilty because I didn't stop and play Lego with Jayden with him when he asked. Or I feel guilty because I didn't take him somewhere new today to give him a new experience. Then I have to bring myself back to the moment and remind myself how happy he is in the moment. He's so happy no matter what he does. But I still can't help but feel I should be doing more.

He's so excited about Christmas. About finding the elf on the shelf every morning, moving the felt candy cane in our calendar to show how much closer it is until Christmas Day and today he got to see Santa.

My awesome friend who I adore organised her husband to come over in the big red suit and hand out a gift for each of the kids to put under the tree. Jayden was so happy. All the kids were. Nothing makes me smile more than seeing my children smile.


Our house is also decorated with lights once again and Jayden is over the moon about that. We go out the front almost every night to admire them and it gives me so much joy to see him so excited about them.

We also recently went away for a couple of nights which the kids loved. Our traditional early Christmas celebrations with my dads side of the family at a place south of Perth. The kids look forward to it every year, Santa visits and they get to spend time in a pool all day. It was really nice. I found myself just wanting to be with my kids though. I didn't get to spend a lot of time with everyone else and it was really nice to spend it with my kids instead. Now that they are a little older they spend so much time on their screens that I miss them. Technology is just so very different from when I was young and I wish it weren't. it was really nice not to have it there and to just be together.








It's late and I'm now ready to sleep. And the kitten has awoken and now making it almost impossible for me to write.

Hoping and praying this time of year will be something I get to experience with all my children for a very very long time to come.


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